Flaccid

 

Bradley turns 2 years old in less then 2 weeks!

As we approach his second birthday, I'm so grateful that we have had the time we have.

Each day more is a blessing, which I am grateful for.

I'm settling into something that I didn't know I'd ever be.

My confidence is gaining. My understanding is deepening.

I am the Mommy of a miracle.

 

One of Bradley's physical therapists was here for her monthly visit recently.

I really enjoyed the conversation.

Sometimes I think she comes to give me therapy!

And we were talking about muscle contractures.

I asked her more about them.

Every therapist, that has ever evaluated Bradley, has looked for muscle contractures.

I know what they are.

I see other kids with them.

The tightening of the muscles that cause their arms or legs to make unusual shapes.

Their mommies who work to stretch their arms and legs while they wait between appointments.

I've seen them.

And the therapist said that children with neurological disorders are prone to muscle contractures.

I said, "Well why doesn't Bradley have them then!?!"

 

And she finally cleared something up for me.

She said that Bradley appears to be more on the flaccid side.

Very loose.

Very relaxed.

That if he became spastic, he could get them, but for now she was glad to see he was loose.

 

I told her I wished he wasn't loose. I wish he held up his head and could sit!

And she said if she had to pick a way to be, it would be to be loose.

Loose like Bradley's muscles are.

Free and relaxed.

She said the tightness of the muscle contractures is painful; like a muscle cramp.

And it can cause great discomfort.

And I was suddenly grateful that Bradley has never held up his head.

For the first time since his birth, I was grateful for his flaccidity.

 

 

Bradley is such a sweetheart.

He is amazing to deal with this frustrating body like he does.

He continues on.

Never failing.

Never wavering from this weak body that cannot do more than a newborn's.

 

 

I know that Bradley will never walk in this life.

I don't think his brain can do it.

It cannot hold his muscles in the right way to make him do anything.

Instead of his brain making his muscles tight, it makes his muscles super loose.

 

 I'm starting to come to peace with it.

It's okay.

He's always in a very relaxed position.

And I'm glad he is relaxed.

 

Isn't that what every Mother wants for her children?

Even what Heavenly Father wants for his children?

That we have peace.

That we are free.

That we are relaxed and not afraid and not tortured.

 

Grateful for the loose nature of Bradley's muscles tonight.

Grateful he can have peace.

Grateful he can relax.

It finally is giving me peace because I can recognize that he is at peace.

 

I'm am grateful for peace tonight.

It has been an over looked blessing.

 

Degenerative Brain Disease

The school year is coming to a close.

Award assemblies took up my whole day on Monday.

I sat and listened to my children's awards and felt so proud of the kids they are.

So proud of the people they are becoming.

Feeling like my years of work are paying off.

I deserve to be proud of them.

 

 

 And during Madeleine's assembly a boy got up to accept his award.

And his baby brother shouted out his brother's name.

And everyone in the assembly sighed and smiled at the sound

of the baby brother being proud of his big brother.

And he called out his big brother's name again.

And, again, everyone smiled and sighed.

And I got tears in my eyes as I looked down at Bradley

and realized he would be doing the same thing, if he could.

If he could see his siblings getting their awards, he would shout out and call,

"Maddy!!"
 "Jake!!"

But instead, Bradley lay in the stroller and seized and slept.

 

 

All of my big kids are progressing so much.

They are getting so big.

Growing and learning so much.

Charlotte has started to write her name!!!

She is starting to write anything I will spell for her!

She spends all day writing love notes to all of her cousins.

 

 

 

 

 

 

The other day I was going through some old pictures.

I found this one of Bradley from the hospital stay

when he never came off the oxygen last May.

I cannot remember his eyes like this.

And it pained me to see his brightness.

And I cried as I scrolled through the pictures.

 

 

 

 Bradley's hospice doctor has called it a neurodegenerative disease.

A degenerative brain disease.

My three older children are going one direction.

But Bradley is going a completely different, direction.

 I haven't been able to stop it.

In some ways it is a very sad thing to watch.

 

 

 

 

BUT - yesterday, I got a message from a person I know because of Bradley.

A lady that has been following Bradley since the beginning.

We really only know each other because of Bradley. 

She's a self-proclaimed Bradley follower :-)

 

And she had some news for me.

She said there was a young woman who was getting baptized in her ward.

And the young woman, really lives in MY ward boundaries.

And she said I knew her. She said both our Mother's were good friends.

And she told me her name.

And I thought about it for a second and I knew who it was!

 

And I told Bradley's fan that I would love to come to the baptism!!

And I could not believe I had been connected to this old family friend,

in her conversion to the gospel, because of Bradley.

And I realized that Bradley is doing his work.

Even if his brain is regressing; his work continues.

God's work continues.

And I would have never known this contact without my missionary son.

And I'm grateful Bradley has been faithful to his missionary call.

He took on this broken body to touch people in ways my other children cannot.

Sadness surrounds us all as his mortal life slips through our fingers;

but joy is found as we realize that Bradley can reap

the fruits of Heavenly Father's work even more than we can do alone.

 

 

Tonight I'm very proud of my missionary son Bradley.

 

 

 I want to be a missionary now.
I don’t want to wait until I’m grown.
I want to share the gospel while I’m young,
For I have a testimony of my own.

I want to tell my friends about our church
And the happiness it brings to me.
I’ll tell them how the gospel was restored,
Tell them how the Book of Mormon came to be.

Then I can be a missionary now.
I don’t have to wait until I’m grown.
I’ll live each day the best that I know how,
And they’ll see I have a testimony of my own,
A testimony of my very own.

 

To Be Redeemed

 

In Sunday School today, we were talking about the temple.

We were talking about how the temple can cleanse and redeem us.

We were talking about how the service rendered in the temple makes us better for it.

And the teacher said that when we do work for those that cannot do the work for themselves,

 we become Saviors on Zion.

And I thought about Bradley.

And his work.

The work he physically cannot do.

Because his legs don't work.

He has no voice.

He has no sight or even a means of communication.

And I thought about how I serve Bradley everyday.

How much work I do for him.

And the work that is not only physical,

but the work I am here to share for him.

 

And I thought about Bradley's work in my behalf.

How I cannot do this work myself.

How he has changed and turned me into more.

How much he has taught me.

And he and I are dependent on each other, to help each other do the work.

We are a team.

I am here to do the work he cannot do for himself.

And he is here to do the work I cannot do for myself.

 

And then I went into Young Women's

and in the lesson I asked the girls what it meant to be redeemed.

And there is a reason why the youth should speak during lessons.

One of my girls who is very introspective, but has the tendency not to speak said,
"You know when you go to a place like Chuck E. Cheese?

And they have tickets that you win.

And in the end you take those tickets to the counter.

And you redeem them?

That is what it is to be redeemed.

We are taking something of little value and turning into something more.

Something we want more."

I had goose bumps and I told her she was so right!!!

We all have a Savior.

He will redeem us.

We will be more!!

 

And I was sent my own personal savior in Bradley.

He came to redeem me.

To change me into something more.

And these lessons he is teaching me, help me to understand my Savior more.

The Savior's redeeming power.

And tonight, I'm grateful Bradley and I have each other.

We are both here to help redeem each other <3 <3
I feel very fortunate tonight to be his other half.

 

 



The Perfect Child

 

 This morning a friend stopped by to pick up her order

and we were chatting and she told me her baby is not gaining weight

and is having developmental delay and they are going to the geneticist to have the baby tested.

Tears came instantly to my eyes.

It reminded me of my fears. I felt her fear. I felt mine too.

I wanted to hug her and tell her that everything will be okay.

But so many people have told me that and sometimes it does NOT feel okay!!

I said too much. I told her how scary it is.

I talked about death.

 

And I should have told her congrats for being the Mother of a special spirit!!

I remember the first time someone actually said "Congratulations!!"

when we were finding out Bradley was special.

It was so wonderful to hear "Congrats!!" instead of "I'm sorry!"

There are special lessons to be learned from special kids.

It CAN be a wonderful thing!!

 

 

Tom and I have been talking a lot about our genes lately.

How in the HECK did our genes produce Bradley's body?

I mean we have 3 VERY typical kids!!

More than typical in some ways.

Amazing kids!!

 

 

And Tom said tonight, as he was drawing up Bradley's 16 doses of Bradley's 8 medications,

"How did we have all of these normal children and THEN have Bradley?

It's like our genes went bad or something."
{I think it too when I draw up all of those freakin' meds!!}

 

 

And I thought about that for a second. 

And I said,

"Or, maybe, our just genes got better!

More perfect! More amazing!"

 

Because we all have our strengths and weaknesses.

And Bradley's strength is definitely NOT health.

But he has shown how strong his spirit is!! 

 

And I'm sure that is why he is passing us by.

 Because he has passed God's test already.

 

So perfect the world could not contain him.

He IS our perfect child <3

 



The Veil is Thin

Fifteen minutes after he came, I was pacing the floor.

I was scared.

I was worried, that me having him at home, and not in a hospital, had hurt him.

And I kept asking everyone if they thought he was going to die.

He only weighed 4lbs 8oz!

 And I thought I had done something to cause the growth restriction too.

And the stress of the situation made me hemorrhage profusely.

And I went to the bathroom to clean up.

And I passed-out while I was sitting on the toilet.

And my midwife and Tom rushed in and caught me before I hit the ground.

And they carried me to the bed, and lay me on a plastic sheet.

And I came to and cried and asked if my baby was okay.

And the midwife was massaging my uterus,

and clearing clots from my womb,

and telling me that I had to calm down or I would die.

She worked and massaged my uterus for quite sometime

and she told me that stress makes a bleeding mother, bleed more.

She said I HAD to stay down for the next 12 hours to make the hemorrhaging stop!

 

And I told her I wanted to nurse my baby, and she said he would need some formula for now.

And she told Tom to go and get a bottle and feed the baby for me while I rested.

For the next 12 hours I thought about what I had done.

I wondered what I had done to cause this.

And I tried to come up with a name for my baby.

And I kept envisioning, the names I'd pick, on headstones.

And I felt so horrible, I thought I was dying too.

And I thought about a double funeral for the baby and me.

 

 

And all of this time, Tom was downstairs, in my chair, holding and feeding our new baby.

Tom remembers the baby and him making eye contact for a very long time.

And he said that he felt like the baby looked deep into his soul.

And he and the baby bonded just by staring at each other.

And Tom said it was the deepest stare he had ever had with any of his children.

And he knew they had known each other before this life

and that it was like the baby was saying "Hi, again!"

 

And Tom brought the baby back to me when the 12 hours had finally passed.

 And he handed him to me and told me about the staring contest.

And I told Tom I was thinking of naming the baby 'Bradley'.

And Tom agreed that would be a good name for the little guy.

 

And as we have progressed on this journey,

so many people have told me that Bradley choose to come to this body.

And that has never felt right to me.

I think Bradley knew WHAT he was coming to.

I think he knew WHO he was coming to.

But because he had never been to a mortal body before,

 I'm not sure he totally understood the journey till he got here.

 

But Bradley has always had a quiet calmness all around him.

And tonight I'm understanding why.

The veil is thin for Bradley.

And he understands the eternal plan.

And this is not distressing to him, like it is for me.

He is not scared to fulfill Heavenly Father's mission for him.

 

He sees the beginning, middle and end, so perfectly.

And he is comforted to be with me while the angels reach around us.

 

And if I'm quiet enough;

and I hope enough,

while I hold him;

I think the veil thins for me too.

And I can see a very tiny glimpse into eternity with my Bradley.

 



The Intended Mother

 

Every time, I tell Charlotte about a new baby that has been born,
 she asks me two questions;

1.) Does the baby walk?

2.) Does the baby breath?

 

 

Charlotte thinks all babies have g-tubes and oxygen and cannot walk.

It's a little confusing for her.

Bradley will always be our baby.

And she brought me her baby doll today

 and showed me how her baby doll could hold up her head.

That made me chuckle.

 

And the babies Bradley's ages, are not only walking now,

but they are starting to look like really big kids!!

When I see his peers, I'm more shocked than sad anymore.

 

 

I'm starting to forget about Bradley's pregnancy.

The birth.

The pain.

The NICU.

Some of those memories, I'm glad to be rid of!

 

 

Jacob turned 7 on Saturday,
and I tried to remember the details of his birth,

 and I could not remember!

Memories I thought, I would NEVER forget, are gone.

 

For the longest time, I was SO sad things hadn't turn out how I had planned.

But time really does heal all wounds.

And I am grateful memories fade!!

 

I'm am the mother of these four children.

I am a mother of two girls and two boys.

I am a special needs mother.

I am a mother to a medically complex child.

And I know, someday, I will be the mother to an angel.

And I know this IS the mother that Heavenly Father intended when he created me.

It's more than just a calling.

It's was how it was supposed to be all along.

 

I didn't have a better plan then Heavenly Father's plan.

No one does.

This is the intended mother.

 

The Door into Heaven

 

I had a hard weekend.

Mostly because of Bradley's breathing.

All of Saturday and part of Sunday morning, he was holding his breath occasionally.

He'd skip 5 or more breaths.

And when he'd finally breath again, he'd gasp for air.

And he did not cry. It was like he was okay without getting air.

It's was a hard 36 hours for me.

And on Sunday morning, we were getting ready for church, even while Bradley gasped for air.

And I asked Tom if he wanted to open a fast with me.

I asked him what he wanted to fast for.

And he shook his head and said with a chuckle, "I don't know."

And I said I wanted to fast for Bradley again.

Fast for the 22nd month in a row for my Son.

And we knelt by the bed, and we offered a prayer and both of us sobbed the entire time.

And Bradley lay on the bed near us and heard our petition to God.

And I'm certain he heard our tears too.

 

 

And when we finished I sat and held Bradley's hands to my face.

To my tear soaked cheeks.

And I bathed his hands and his arms in my tears.

And I whispered in Bradley's ear that I was okay if he had to go do the work in heaven now.

And I told Bradley I would be coming right behind him.

That I would see him again.

By this time we were already very late for church.

And Bradley was still gasping for air.

And I told Tom we needed to just go!!

It's not like Bradley was bothered by the breathing troubles.

And that he would be fine at church.

But I NEEDED to go.

 



 

And we faithfully went.

And somewhere between sacrament and Sunday school, Bradley stopped with the breathing tricks.

And I finally could breath too.

 

Jacob and I were talking tonight before bed.

I asked Jacob what he knew about heaven.

He told me he knew Bradley was going there.

And I asked him how he knew that.

He said that there are three kingdoms,

and during the judgement,

kids like Bradley will get to go through a little door to the best kingdom.

I asked him where he had heard about this door;

And he said it was just something he knew as he shrugged his shoulders.

 

 

I think I know about that door too.

And I'm certain Bradley will be whisked right through that door.

I have to make it back with him!!

And I think he wants to know for sure I am coming behind him, before he can go.

Bradley, I'm coming.

I promise you.

 I will!!